Warfarin

[Willow7733]

Has anyone experienced Warfarin failing you more than once? I have had three different instances where I had large clots in my lungs while on it. I am still on it (after my coverage from work denied paying for Framing injections - the only anticoagulant that hasn't failed me). Just wondering if this happens and what was done?

[GinaD]

We're all different, and latest science is just beginning to understand how small gene expression differences impact an individual's reaction to illnesses and medications. Warfarin has been a literal life saver for me: MRI confirmed strokes, DVTs, --all vanished like a snap of the fingers when I started warfarin, My GP/internist in those early days asked for veinous draw PT/INR, first every other day with detailed diet and activity logs. Later he asked for the PT twice a week , then later, weekly, then monthly. Based on the data he analyzed he concluded that I was one whose blood factors worked overtime to compensate for warfarin's blood thinning action. So, he put me on a fluctuating warfarin dosage and encouraged me to eat high K content leafy greens every day. And it worked! I have been on warfarin for 23 years now and have been out of INR range 4 times. And no more DVTs, no more migraines or mini strokes. I have no idea if my experience has any relevance to you. but you might try keeping your own detailed diet, activity and sun exposure, doseage and PT/ INR levels to see how these impact your body.

[diane1428]

hi sorry you’ve had such awful effects. Why are you on warfarin? If it’s APS do you have your inr checked very regularly. I have mine checked between once and three times a week and veinous tests as finger prick tests are not accurate enough for me. It’s difficult not knowing why yr on it. Unfortunately the best medication for APS is warfarin. Trials r taking place on other drugs but not conclusive at mo. Keep going to doctor/consultant and make sure yr having the right blood tedt

[Willow7733 in reply to diane1428]

I do have APS and I get my INR checked weekly. No finger picks. I work at a local hospital and it is done there. I am followed by a hematologist and the anticoagulation clinic weekly.

[silemoran]

Sorry to hear this Willow I am on Warfarin since 1988 and had no clots . I hope that your G P can sort this dangerous situation out for you soon. Best Regards Sheila.

[Tucson]

I've had 3 strokes in total 2 while on warfarin. Always in range and always stable and yet had 2 strokes which no one could explain. After the first they added aspirin to the warfarin. after the last one I refused to continue with warfarin and was eventually put on Fondaparinux which I've now been about 3 years. No problems at all since, it does involve lots of blood tests etc to ensure all is well which is very reassuring tbh.

[MaryF Administrator]

Hi, many on this forum have had incidents like this, usually after some consideration of your case your main Hughes Syndrome/APS consultant would provide injections for when your INR drops to low? Or consider a different medication, but many on Warfarin also have to have injections. MaryF